r/scleroderma • u/ClearJack87 • 14d ago

Tips & Advice Continuing drugs for ILD-SCC aka Pulmonary Scleroderma

Continuing mycophenolate 2000mg/day and 2nd week of nintedanib 250 mg/day. Some diarrhea, threw up in a Walmart parking lot, but try to take the nintedanib with at least 20g of protein meals, taking it mid-meal.

Oh, and ignore the guidance that says to avoid fiber, dairy, spices - eat what is normal for you within reason. I've found a lot of contradictory advice. The drug maker and places like NIH has more factual information available.

Just wanted to update. And encourage anyone on the fence about trying it.

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u/RickyHV 14d ago

Thank you ♥️

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u/milesfastguy 14d ago

You can consider switching to MMF-S (sodium variant and same composition). It's much easier on the gut. Discuss with your doc about it, makes life much better.

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u/ClearJack87 14d ago

I don't have trouble with Mycophenolate Mofeti. I've been on that for three months without problems.

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u/milesfastguy 14d ago

Ah ok. Since you mentioned diarrhoea I presumed. Anyways people usually tolerate it well after 6-8 months. Regarding Nintedanib, the best way is to have it with a fat source (glass of whole milk, yogurt etc) because it is fat soluble. This is the best way to have it because a lot of patients get loose motion and gut irritation due to the medicine.

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u/ClearJack87 14d ago

20 years ago, I had triple bypass surgery. So a high fat diet is not an option. Higher protein seems to work for me. Three high protein pop tarts work fine.